Archive for May 2008

Lorenzo Odone, the subject of the 1992 film “Lorenzo’s Oil” has died, more than two decades after his doctors said he would succumb to ALD, an “incurable nerve disease” which left Odone blind and in a vegetative state. Read the story of his life and death here, where it is better put than I could try to rewrite it.

But the most important fact of Lorenzo’s life is that he lived well beyond the point that his doctors, the supposed experts, said he would. Which just goes to show, again, and I can’t stress it enough, that you can only place so much importance on what the doctors say if you have a child with, or you yourself have a disability or a life-threatening disorder or disease. Doctors only know so much. They only know what they have seen, and what they have seen defines the odds they give their patients, and at some point or another, someone like Lorenzo is going to come along and defy the odds by leaps and bounds.
And as you will read in this story, Lorenzo had parents who did fantastic things to give him a life that was above and beyond what was expected.

The Oscar nominated film of Lorenzo’s life starred Susan Sarandon and Nick Nolte.

It always strikes me as funny when a fully able-bodied person reads or hears something about the everyday trials of a disabled person and they respond with something like this:

“Wow, I complain a lot when I am tired or have a stomach ache but after hearing that, I will never complain again.”

Why is this funny? Because let’s face it. You know that within a day of saying this, that person will have a backache or a stomach ache and they will probably vocalize some form of complaint. That’s what we do. All of us. Disabled or not. Very rare is the person who never complains about anything. It is not as though by swearing off complaining, you make the life of the disabled person you just read or heard about any better. Though, it also is not as though by complaining, you make your own life any better. It just makes you feel better to vent.

Having said that:

Here is a story that, upon reading it, should make anyone who is not severely disabled or elderly, or otherwise in life-threateningly poor health, and even anyone with just a minor disability, happy with what they have. It is a story about a list that apparently does exist somewhere, defining what criteria a person would have to meet in order to be considered priority in getting care in the event of a major epidemic or other world-shaking emergency.

What gives the people who will be making these decisions the right to play God like this?, you may rightfully ask. Is one life more valuable than others? Or is it just a decision made based on logic and what’s best for the future of the human race, a situation wherein every individual human life is assigned its own value?

But let me say this. The criteria of the “saved” in this story does not cover strength of character. What I mean by this is, what if there is a major world-wide nuclear disaster and the world population is depleted because the focus is place on saving the strong bodied, healthy-hearted, young, virile, fertile people. What if, on day two after the bomb, we find that a higher than expected percentage of the saved are mentally, emotionally incapable of handling the extreme stress, whether from lack of experience (youth) or just plain lack of adversity in their lives (good health, a result of opportunity and genetics).

Let me be perfectly clear: I am not going to try to compare the every day trials of the disabled, or even our worst moments in life, to a nuclear disaster. This is just one of my what-if questions. I am just concerned about what, as a society, we have chosen to peg as desirable traits.

I have been quietly following this story, about Oscar Pistorius, a double amputee who wishes to compete in the Olympics for his country South Africa alongside fully able-bodied competitors. If you’ve been reading my work, you’d probably guess that this is exactly what I have wanted: Pistorius is now eligible to attempt to qualify as an Olympic athlete, not a Paralympian.

What do you all think of this? Do the carbon-fiber “legs” that he wears give him an unfair advantage or give his body and unnatural performance contrary to what the spirit of the Olympics is all about in the first place? The experts at MIT who have tested his “legs” say that they do not. They are made to mimic the performance of a biological leg and foot as naturally as possible. In this age of performance-enhancing drugs, though, this is bound to raise some eyebrows.

Underneath the story I have linked to above, there is a series of reader comments and one of the readers made a great point (which I myself responded to). He basically said that Pistorius should be required to either compete as an “able-bodied” athlete or a “disabled” athlete. He should not be able to have it both ways, even though it looks as though for now at least Pistorius will be doing just that. If Pistorius is claiming to be “able bodied” enough to compete in the regular Olympics, then is it unfair for him to compete in the Paralympics against “disabled” athletes?

But hey, let’s not get ahead of ourselves here! Pistorius still has to qualify for the Olympics (or be selected as an alternate if he does not make a “qualifying time”). If he can’t do it, then we’ll know the “legs” gave him no unfair advantage and he will go back to being a “disabled athlete” again. Let’s let this one play out.

I have spent a lot of time lately listening to Paul McCartney’s post-Beatles music, and I realized that the song “Helen Wheels” is not only one of the greatest pieces of block-rocking boogie that Macca ever recorded, but because of the title, with a complete overhaul of the lyrics, the song would make a great anthem for people in wheelchairs such as myself. Then I realized that no song can really cover the wide range of experiences that all people in wheelchairs will relate to.
However, this is my attempt. Take it for what it is worth:

——————–

I said farewell to a doctor from Hell who said I’d never have much of a life

That kind of clown never gets me down when I go home to my sweet wife

My early days now seem like a haze, spent a summer in a body cast

But life is good, and though I’ve never stood, I wanna make this journey last

Hell on, Hell on wheels

Everybody else thinks I got the raw end of the deal

Hell on, Hell on wheels

But I’d never have it no other way

L2 level para, full of metal but I never did think twice

To imagine me as I wished to be and singin’ wouldn’t it be nice

Doin’ fine and I never pine away on what I can not do

“Life ain’t fair” never goes nowhere, and you know it’s up to you

Hell on, Hell on wheels

Everybody else thinks I got the raw end of the deal

Hell on, Hell on wheels

But I’d never have it no other way

I can’t make sense of those who take offense when people say I’m “wheelchair bound”

That’s okay, man, I do it my way and they’ll never hold me down

Been a casualty of all that “woe is me”, I’ve seen fire and I’ve seen rain

Life is good, though I’ve never stood I think I’d do it all over again

I’ve written a bit about my love for the game of baseball. But I just thought of another reason I love baseball season. Because between April and October (football and basketball pick up the slack from November to March) if you watch the news you can be sure to here stories about players who are on the “disabled list” or the DL.
I love the DL stories. Because it is one good example of a news story where the primary focus is, and should be, the person’s disability. As I have said before, I don’t like stories where the headline is “disabled man performs such and such a feat”. I like to see disabled people in the news, but on their own merits, not on the fact that they are disabled and “look what they were able to pull off!”

So the disabled list for Major League Baseball and other sports, takes the heat off us truly disabled people who are just trying to live our lives and accomplish our goals without being held up as heroes for it, and shows other journalists just when it is appropriate to point out disabilities.

Here is a perfect example of when it is “acceptable” to assist a “disabled” person, albeit in this example, a temporarily disabled person.

Sara Tucholsky, a Western Oregon University softball player, hit a game-winning home run for her team, but injured her knee after passing first base. If you haven’t heard the story already, click here, because what happened next was not only a gesture of consummate sportsmanship, but like I said, an example of a situation where a disabled person would probably happily accept help.

NOTE: This is not to say that offering to pick up a disabled person and carry them will always be greeted with gratitude. But you get the idea, based on the circumstances described here. When it’s just the right, humane and neighborly thing to do to offer help is when a disabled person such as myself appreciates it the most. Not when a person jumps to the conclusion that I must need it because I am disabled.